March 9th 2019
A draft revision to the rule on the so-called new type of prenatal diagnosis, adopted by the executive board of the Japan Society of Obstetrics and Gynecology earlier this month, is expected to substantially increase the number of medical facilities authorized to conduct blood tests on pregnant women to detect possible chromosome abnormalities such as Down syndrome in their fetuses. Officials of the medical organization say the measure is being considered to address the problematic situation in which such tests are performed by large numbers of unauthorized clinics without giving the pregnant women and their families adequate counseling to help them make the tough choices in response to the test results.
What the officials call the “worst” situation over uncontrolled prenatal diagnosis must be addressed. However, concerns have been raised about whether the quality of the counseling and other support provided to women taking the tests and their families can be secured if the tests are made available at a wider range of medical institutions, including small clinics, by easing the requirements for authorized facilities. Some experts also worry that making them more widely available may lead pregnant women to think that everybody takes the tests, whose results may force difficult choices on them.
The issue needs more careful scrutiny.
The new type of prenatal diagnosis was launched in Japan in 2013 as a clinical trial. Despite lingering concerns that prenatal diagnosis could result in having people choose between possible lives by examining the chromosome abnormalities of fetuses — thereby excluding people with disabilities — demands for the tests have increased as more women began to have their first child at a more advanced age. About 65,000 women had reportedly taken the tests as of last September, and roughly 90 percent of the nearly 900 pregnant women whose fetuses were diagnosed with abnormalities chose abortion.
In providing a prenatal diagnosis, it is deemed essential to provide the women taking the tests and their families adequate information about the tests and sufficient counseling to help them make the tough choices in response to a troubling diagnosis. Therefore, the Society of Obstetrics and Gynecology has allowed the tests only at medical institutions capable of providing enough counseling before and after the tests — the facilities need to be permanently staffed with a obstetrician-gynecologist and a pediatrician with deep knowledge of the matters involved, either of whom must be qualified as a genetic specialist who should be able to inform the patients about the lives of people with chromosome abnormalities and systems to support them. Currently, 92 institutions across the country such as university-run hospitals are authorized to perform the diagnosis.
But the organization also thinks that one of the reasons behind the large numbers of women who take the tests at unauthorized clinics is that they cannot find authorized hospitals in their areas — because some parts of the country are left without authorized institutions since the requirements are so tight. Therefore, the organization has reportedly been discussing ways to increase the number of facilities where women can receive the prenatal diagnosis in more adequate ways.
Under the proposed rule, clinics and other institutions to be newly authorized as “partner facilities” would not need to have a genetic specialist on staff. They would be allowed to perform the tests as long as they are facilities where pregnant women can give birth, are staffed with obstetrics and gynecology specialists who have completed JSOG-designated training courses, and are in constant partnership with pediatricians. If the tests at such facilities point to the possibility of chromosome abnormalities, “core” institutions that qualify under the old guideline would provide subsequent counseling to the women and their families.
The number of pregnant women who choose to receive the prenatal diagnosis is said to be rising sharply as they grow more concerned about the health of their unborn child because they’re giving birth at an advanced age. At the same time, a number of women who tested positive for the chromosome abnormalities in their fetuses are said to choose abortion without sufficient knowledge and understanding of the diagnosis and the choices that they and their family have. It must be carefully examined whether the Society of Obstetrics and Gynecology’s draft rule revision would contribute to enabling more people to make well-informed decisions as to whether they take the tests and how they would respond to the diagnosis.
Currently the new type of prenatal diagnosis is performed only on the three kinds of chromosome abnormality. Due to the rapid advances in testing technology, however, it is forecast that such diagnoses may be carried out in the future to examine the risk of a wider range of illnesses in people even before they are born. Instead of leaving the issue solely in the hands of the medical field, it is about time to hold broad public discussions on the technology and its implications.